Boy with rare brain condition proves doctors wrong

(ABC) -- When Ben Holloway was diagnosed with a rare brain condition about a year ago, doctors weren't sure he was going to live, let alone be able to play football.

But one year later, Holloway proved doctors wrong. Though he still needs check-ups, Holloway is now a healthy, thriving 5-year-old who recently started kindergarten, and he even got to play in a football game recently, thanks to a local high school football team in his hometown of Chatsworth, Georgia.

Donning a green Murray County High School jersey with his name on it and a white helmet, Holloway was cheered on by football team members chanting his name as he ran down the field this past May, his dad Joshua Holloway told ABC News. And though he stumbled two times, team members helped him back up and went wild when he finally scored a touchdown.

"The entire team picked him up, chanting, 'Ben! Ben! Ben!" he said. "I've never seen him so happy or ecstatic. He was on cloud nine."

Ben was diagnosed last year with a brain dural arteriovenous fistual (BDAF), his dad said.

"Last spring, my wife was telling me that Ben's eye looked like it was bulging, and though I didn't think much of it, she was very persistent," said his dad, Joshua. "We brought him to a pediatrician after a few days, and he knew something was wrong."

Ben was immediately taken to the emergency room, where he got a CT scan that showed something was abnormal, and further tests showed that he had a BDAF.

BDAF is an abnormal connection between blood vessels outside and inside the dura, the brain's fibrous covering, according to Dr. Nicholas Bambakidis, who did not treat Ben, but who is a neurosurgeon who treats other children with Ben's condition at University Hospitals Rainbow Babies and Children’s Hospital in Cleveland, Ohio.

"You can have side effects and devastating problems such as bleeding in the brain, which can lead to stroke, and other problems such as swelling in eyes that can cause vision loss," he said. "In children, these fistulas seem to form spontaneously, whereas adults usually acquire them from trauma such as gunshot wounds."

After the doctor did an angiogram to see how bad Ben's situation was, a procedure that took over three hours, he came out and told the family that it was the biggest fistula he'd ever seen, Joshua Holloway said.

"He said he could attempt to fix it, but there was a 50 percent chance he'd have a stroke and a 20 percent chance he might not make it off the table," he said.

After further research, Ben's parents went to New York City for a second opinion from Dr. Alejandro Berenstein, the doctor who invented the procedure to treat Ben's condition.

"He had a consultation on a Friday, and the following Monday, he performed his first surgery on Ben," Holloway said. "Ben's condition was so advanced that he couldn't just do the traditional surgery of opening up his brain. He had to put platinum coils into the fistual first -- into Ben's leg, through the aorta, into the heart, through the neck and then up to the brain."

An additional surgery was performed a few days later to bond everything together, he added.

The surgery was successful, and Ben has only had to do one emergency surgery after a dangerous leak this past June, his dad said.

"He's going to have check-ups to make sure nothing is wrong every six months, but there's a possibility that it could be gone and there will be no need for a fourth surgery," Holloway said. "He's been doing great. You'd never known anything was ever wrong with him."

Though Ben will likely not be able to play football competitively because of its intense physical nature and the risk for head trauma, he has been able to play other sports such as baseball and soccer, his dad said.

The condition is rare in children, Bambakidis said, noting his hospital sees about two to three cases a year. He added that because the condition is considered "too high-risk to treat" by community hospitals, where doctors may not have as much experience and expertise, it's important to address the condition at larger hospitals that may have the proper surgeons and specialists to treat and potentially cure such conditions.

Ben's dad has set up a GoFundMePage to help with the costs of Ben's medical treatments.